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Re: Second Opinion

You are relatively close to both Rochester (Mayo) and Cleveland, if there is not a qualified specialist closer to you.

Based on my personal experience, I would think twice about the nasal biopsy; it is an invasive procedure and can cause permanent harm, as it did in my case. If the serology is convincing for vasculitis, there may be no need for it.

Both of the physicians Pete mentions are highly respected specialists in GPA.

Re: Second Opinion

I would also recommend to convey a sense of urgency because your daughter needs see the Weg specialist within a week instead of several months, these doctors are very few and tend to have long waiting lists.

Re: Second Opinion

Welcome to the family, Christine. I am glad you are going for a second opinion with a vasculitis expert.

It sounds like wg symptoms. Wg can be smoldering for years while one can have normal labs. But the symptoms are there, and it should be treated.

Also, I agree with Tom about avoiding the nose biopsy: I had it twice and it turned out negative. False negative. But docs considered it and delayed a serious treatment for my wg until the bridge of my nose collapsed and I developped a saddle nose.

A real WG expert will know to diagnose it, even when the labs are ok. Make a list of all the symptoms and if there are anything else which might be related. For example, I had gums bleedings and rash which were wg related.